希少疾患の小児とそのきょうだいの視点

希少疾患で疾病負荷の高い小児/青年がいる家族の健康関連の生活の質と精神的健康:罹患した小児とそのきょうだいの視点


Wiegand-Grefe S, Liedtke A, Morgenstern L, Hoff A, Csengoe-Norris A, Johannsen J, Denecke J, Barkmann C, Grolle B, Daubmann A, Wegscheider K, Boettcher J.


Health-Related Quality of Life and mental health of families with children and adolescents affected by rare diseases and high disease burden: the perspective of affected children and their siblings.


BMC Pediatr. 2022 Oct 14;22(1):596.

doi: 10.1186/s12887-022-03663-x.

PMID: 36229869; PMCID: PMC9563162.


https://pubmed.ncbi.nlm.nih.gov/36229869/

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